January 20, 2020

Dear Sonzee, 

Today is one of the more challenging days to recollect.  It is the one that left me feeling in limbo and completely unbalanced on that tightrope I had been walking your entire life.  It felt as if I was walking on a disappearing rope and at any moment I would plummet.  Today was the day that your fever was still present and no specific flu symptoms presented, but instead, nurse Paige began to get concerned over your oxygen levels.  Your poor cheeks were turning a light shade of pink and when I returned from work and checked on you, your eyelids looked like they were getting puffy and you were on oxygen.  You looked exhausted, and you were just sleeping in your bed.

By the nighttime Aba went to play hockey and it was me and savta holding down the fort.  You started to vomit around 9pm.  I panicked...vomiting was no longer a common Sonzee symptom unless your tube was misplaced.  Savta came to the rescue to help me after I literally had to call her over the phone from the other side of the house.  It wasn't just a small amount of mucous either, it was a ridiculous amount of that awesome bile you puked all over Auntie A circa 2016 when we first got you on the NJ tube and those residents learned really quickly that it is best to start really slowly with you.  You were so lethargic, you were so limp when I lifted you up. Your eyes wouldn't/couldn't even stay open. You looked so sick I didn't have the heart to do anything but change your clothing and blankets and wipe you down.  I could tell you were not up for even a quick bath.

I rationalized that it was my fault because I must have given your meds too fast.  I had not even flushed with water because I was so afraid to cause you more discomfort.  For the remainder of the night, I sat in that uncomfortable red Ikea chair next to your bed switching off between working on IEPs and binge-watching the entire show of "Cheer" on Netflix.  Throughout the last two weeks of hospice, I would repetitively ask nurse Paige how on earth she never said a word about how awful that chair was.  I will forever feel awful for not providing something more comfortable for your nurses.

Tomorrow would be the day that I would start to go down the "what if" spiral.  It would be a day where your father and I would start to butt heads over the potential course of action.  It would turn out to be one hell of a day.

Until tomorrow.

Love always, 

Ema